Hi every Parkies on this forum. If you are a PIGD non tremor dominant, young onset PD person, and have done Deep brain stimulation, please respond to my questions,
How was your experience with the Neuropsychologist? What was the computer test like?
Please share the negatives, if any post surgery.
Would you do the surgery again?
I will be glad if you can assist me.
I don't have any experience. When are you having surgery?
Not had it yet just just finished the psych tests bricking it about the surgery only having it because of dyskinesia and falling not convinced it sounds a bit Victorian to me like removing a tooth with no anaesthetic
During the surgery, I did not feel anything. I was given something to keep me comfortable. My neurosurgeon said the brain doesn’t feel pain. In the recovery room, my head hurt something awful when I tried to lift my head. By the next day when I was released to go home, the pain was manageable. I had my DBS in June 2022. It has taken care of the painful dystonia in my feet. As for dyskinesia, your MDS will tweak your settings and hopefully reduce your med. It is a balancing act that takes time and patience.
my 51 year old daughter had DBS about 7/8 years ago. Non tremor dominant but had compulsive behaviour on agonists. It is currently switched off because she has a Duodopa pump now which has improved PD symptoms better than DBS but is experiencing a lot of dyskinesia.
I had it done two years ago and I am completely tremor free. Yes, I most definitely would do it again, no regrets!
Ben Stecher is a young onset PwP who underwent adaptive dbs in Toronto. He writes a blog and has a You Tube channel. He is very satisfied with the dbs procedure. Here's a link to one of his blog posts.
I first noticed Parkinson's in me at age 36. I'm 65 now. Went through all of the different drugs and was at the point where I hired a night nurse to stay with me because I could not move. I was never a shaker. My body would stiffen up on me. I had been putting the DBS off ands at the end where I couldn't get any worse. The operation went as they said it will. I got the whole thing at once. Both sides and battery implant. They keep you under but not fully as the doc talks to you while he or she is drilling. The whole thing went fine. Because I live alone they kept me in physical rehab. Even with it turned off I was 75% better. At the end of my stay I was my old self. Problems.... Have to find a good doctor. I got all messed up with covid. I noticed my vision slowly get worse. I was almost glasses free. If they drill where they shouldn't you have a chance of speech problems. I have this about three years. On the phone I talk dyslexic. I hear it fine but people can't understand me. I think I am over doing it on the sinemet. It's the one pill I take. Causing involuntary movements which I never had. My battery is taking longer to charge but the newer ones are probably better. All in all I am glad I did it and waited for the right time.
I don't know if vibrating glove would help everyone, and if worth it's worth it for you to wait, and if you could hold until it's out. Just a thought.
Had DBS surgery in 2015 and it has been great! Recommend it!
Do you have any other questions you would like to ask?
I had DBS in June 2022. Did you have any trouble with frequency setting? I did well until a few weeks ago. I am experiencing stiffness and have upped setting but my MDS says the frequency may need tweaked.
is there someone have DBS done and improved significantly his/her gait, shuffling, freezing and balance (significantly decreased falls)?
I thought nature.com/articles/s41531-...
had only a weak recommendation. I would do it too if there is enough chance of benefit. PIGD sucks and it is annoyingly aggressive. Please update me on what you decided and how youre doing. Best wishes and Blessings. Paul
Amantadine side effects for anyone??
i'm very lightheaded most of the time. Could it be apixaban? Or is it normal for Parkinsons? my GP says try Dabigatran.
Side Effects for Which Medication Makes Your Hair Fall Out?
PD and spinal stenosis 
DBS plans on hold due to possible nocebo effects... I'm too crazy for brain surgery.
